Psychiatric consumer/survivors' quality of life: Quantitative and qualitative perspectives

Journal of Community Psychology Volume 23, July 1995

Psychiatric Consumer/Survivors’ Quality of Life: Quantitative and Qualitative Perspectives

Geoffrey Nelson Colleen Wiltshire Wilfrid Laurier University

G. Brent Hall

Leslea Peirson Richard Walsh-Bowers

University of Waterloo

Wilfrid Laurier University

In this research, we examined psychiatric consumer/survivors’ quality of life using both quantitative and qualitative methods. Based on previous research and ecological/empowerment theory, we expected objective indicators of personal empowerment, social support (including negative network transactions), housing, and community integration to be related to consumer/survivors’ perceptions of their subjective qudity of life. The results provided partial support for our model. Qualitative data tended to confirm the quantitative findings and they provided additional insights leading to a revised ecological/empowerment model of quality of life for psychiatric consumer/survivors.

In this paper, we examine the quality of life of psychiatric consumer/survivors from the viewpoint of an ecological/empowerment model, using both quantitative and qualitative research methods. The term “psychiatric consumer/survivor” refers to people who have been hospitalized for severe and long-term mental health problems, including conditions commonly identified as schizophrenia, manic depression, and severe depression. Because we are working from an empowerment orientation, to be described shortly, we have decided not to use professional language of “patients” and diagnoses. Rather we have chosen to use the term “consumer/survivor,” as that is the language used by many individuals who have experienced serious mental health problems and by organizations representing this population (e.g., Capponi, 1992; Chamberlin & Rogers, 1990).

Our interest is in quality of life as consumer/survivors experience it, not in their psychiatric symptoms per se, because we wish to respect consumer/survivors’ desire to be viewed as “people first.” We begin by outlining different dimensions of quality of life and the key constructs in an ecological/empowerment model. Next, we review quantitative and qualitative studies that have examined the quality of life of psychiatric consumer/survivors.

The Study of Quality of Life Studies of psychiatric consumer/survivors living in the community have often

used measures of rehospitalization, work record, and symptomatology as indicators of

We thank the residents and staff of the programs for their participation and Cari Patterson and Denise Squire for their research assistance. This research was funded by a grant from the National Health Research Development Program. Correspondence regarding this article should be directed to Geoffrey Nelson, Depart- ment of Psychology, Wilfrid Laurier University, Waterloo, Ontario, CANADA N2L 3CS.

216

PSYCHIATRIC CONSUMER / SURVIVORS’ QUALITY OF LIFE 217

adaptation. Using only these criteria, a person who lives in poor quality housing, performs monotonous tasks in a sheltered workshop, leads an isolated life, and is asymp- tomatic is considered to be successfully adjusted (Nelson & Smith Fowler, 1987). Alter- natively, Murrell and Norris (1983) have argued that community psychology should focus on a person’s quality of life, including one’s life circumstances, resources, and stressors and one’s feelings of well-being, satisfaction, and internal experiences. They argue that a focus on quality of life is preferable to the traditional medical model approach, because it is more holistic/ecological, focussing on the person in his or her social context.

The study of quality of life, which was pioneered in survey research with the general population (e.g., Andrews & Withey, 1976; Flanagan, 1978), has focused on two dimensions, namely objective vs. subjective and global vs. specific. Objective indicators tap concrete life conditions (e.g., income, type or characteristics of housing, participation in social groups), whereas subjective indicators assess people’s perceptions. It should be noted that objective and subjective indicators have been designed so that there is little or no conceptual overlap between these different types of measures. Items in measures of objective life conditions demand little inference on the part of respondents (e.g., describing how often they participate in community groups), whereas items in subjective measures call for quite a bit of inference on the part of respondents (e.g., how they feel about their group participation). Global indicators refer to overall satisfaction or well-being, whereas specific indicators measure satisfaction in various life domains. Surveys of the general adult population have found that objective life conditions are significantly positively correlated with individuals’ subjective quality of life (Andrews & Withey, 1976; Flanagan, 1978; Zautra, 1983).

An Ecological/Empowerment Model of Quality of Life for Psychiatric Consumer/Survivors

Recent studies have found that participation in various community services is not strongly related to consumer/survivors’ life satisfaction (Champney & Dzurec, 1992; Mercier, RCnaud, Desbiens, & Gervais, 1990; Rosenfield, 1992). This finding is consistent with the argument that consumer/survivors need resources and informal supports, not professional services (McKnight, 1989; Nelson & Walsh-Bowers, 1994). Alternatively, an ecological/empowerment perspective emphasizes the importance of control, participation, and acquisition of resources for people’s health and well-being (Nelson & Walsh- Bowers, 1994; Rappaport, 1987; Wallerstein, 1992). Although much of the research on empowerment has focused on the individual level of analysis (e.g., Lord & Hutchison, 1993; Zimmerman & Rappaport, 1988), Rappaport (1987) has argued that empowerment is a multi-level, ecological construct that includes both personal dimensions, such as perceived control, and social-environmental resources, which promote perceived and actual control. Our approach, which is similar to that of Rosenfield (1992) and Wallerstein (1992), is ecological in that it focuses on resources at multiple levels of analysis. Impor- tant characteristics of the social environment, which consumer/survivors have identified as critical for their well-being (Chamberlin & Rogers, 1990), are socially supportive relationships, adequate housing, jobs, and meaningful participation in community activities. (See Figure 1.) In this research we focus on these micro- and meso-level factors, but not macro-level factors, such as dimensions of the policy and planning context. (See Hall, Nelson, & Smith Fowler, 1987, for an elaboration of the ecological approach to supportive housing for psychiatric consumer/survivors.)

218

1

Number of instrumental roles

Meaningful activity

NELSON ET AL.

PERSONAL EMPOWERMENT

Mastery (perceived Control)

Independent Functioning

SOCIAL SUPPORT

I I 1 Positive emtional support

Positive problem solving support

Emotional abuse SUBJECTIVE QUALITY OF LIFE

Life satisfaction I Avoidance oriented suppoll 1-4 *Housing I I I Relationships

1 Community Integration I 1

HOUBING

Housing concerns Affect balance

Resident control I

FIOURE 1. An EcologicaVEmpowerment Model of Quality of Life for Psychiatric Consumer/Survivors.

Relationships Between Objective Life Conditions and Subjective Quality of Life of Psychiatric Consumer/Survivors

In terms of personal empowerment, Rosenfield (1992) found that mastery (perceived control) was related to consumer/survivors’ quality of life. Although independent functioning has not been considered to be an aspect of personal empowerment in most of the existing research, we argue that instrumental skills to manage the tasks of daily living should enhance an individual’s sense of control and well-being. In this vein, Lord and Hutchison (1993) found that prolonged dependency was part of marginalized people’s experience of powerlessness.

Riger (1993) has recently argued that prevailing conceptions of empowerment have overemphasized traditionally masculine concerns of power and control at the expense of traditionally feminine concerns of communion and cooperation. Thus, a more comprehensive model of empowerment should incorporate factors such as sense of community and social support. In support of this assertion, Lord and Hutchison (1993) have found that social relationships and support are critical in the process of personal empowerment of people who have been marginalized. Moreover, social support has been found to be very important for psychiatric consumer/survivors’ quality of life in several


studies (Baker, Jodrey, & Intagliata, 1992; Earls & Nelson, 1988; Lehman, 1988; Nelson, Hall, Squire, & Walsh-Bowers, 1992). Although most of the research on social relationships and well-being has focused on positive aspects of social support, such as emotional and problem-solving support, a few studies have examined negative and conflic- tual aspects of social network interactions (e.g., Rook, 1984). Hostile criticism from family members was found to be strongly related inversely to consumer/survivors’ quality of life (Sullivan, Wells, & Leake, 1992). In addition to the deleterious impact of emotional abuse, network members can also potentially inflict harm when they give advice to avoid problems. Although this hypothesis has not been tested, research by Moos and his colleagues (Billings & Moos, 1981; Holahan & Moos, 1985) on avoidance-oriented coping has found that avoiding one’s problems is associated with emotional problems.

Basic environmental resources, such as adequate and affordable housing, are also important in an empowerment approach (Wallerstein, 1992). In fact, both the physical and social dimensions of housing have been shown to be related to consumer/survivors’ quality of life. The physical qualities of housing have been assessed with measures of comfort (Lehman, 1988), housing concerns (Earls & Nelson, 1988), and physical conditions (Baker & Douglas, 1990) and have been found to be related to consumer/survivors’ well-being and life satisfaction. Resident control is an important social dimension of one’s housing. An empowerment approach emphasizes the need for people to have control over their living conditions (Rappaport, 1987; Rosenfield, 1992; Wallerstein, 1992). Consumer/survivors’ perceptions of control in decision making and a democratic staff management style were directly related to life satisfaction in studies of consumer/ survivors in both residential (Lehman, 1988; McCarthy & Nelson, 1991) and nonresiden- tial (Rosenfield, 1992) settings.

An ecological/empowerment approach emphasizes people’s need to participate ac- tively in community life (Rappaport, 1987; Zimmerman & Rappaport, 1988). Consis- tent with this viewpoint, research has found that community integration, defined as participation in community life, is directly related to consumer/survivors’ quality of life (Kennedy, 1989). One index of community integration is the number of instrumental roles (e.g., student, volunteer, worker) that one performs in the community. Champney and Dzurec (1992) found that consumer/survivors’ involvement in productive activities in the community was directly related to their life satisfaction. A potentially more important indicator of community integration is the meaningfulness of one’s involvement in the community. Youths’ amount of meaningful activity was directly related to their life satisfaction and self-esteem in a study conducted by Maton (1990). Thus, the degree to which community settings provide opportunities for active participation and meaningful involvement is important for consumer/survivors’ quality of life (Carling, 1995).

Qualitative Studies of Consumer/Survivors’ Quality of Life Where quantitative research is concerned with measurement of constructs,

hypothesis-testing, and generalizability of findings, qualitative research is concerned with studying phenomena in more depth and in a more open-ended way (Lincoln & Guba, 1985; Patton, 1990). Qualitative research enables participants to speak about their own experiences in their own voices (Lord, Schnarr, & Hutchison, 1987), relatively free from the preconceptions of the researcher. Research on quality of life using qualitative interviews has been conducted with consumer/survivors living in board-and-care homes (Lehman, Reed, & Possidente, 1982), group homes (McCarthy & Nelson, 1993), and a variety of other types of housing (Lord et al., 1987).

220 NELSON ET AL.

All of these studies have found that social support was mentioned as very important for one’s quality of life. Participants in a study by McCarthy and Nelson (1993) indicated that their supportive housing contributed to their quality of life, whereas Lehman et al. (1982) reported that residents of board-and-care homes tended to be dissatisfied with and wanted to change their housing. Although having a job and participating in recreational and social acivities in the community was mentioned as being important for quality of life in all three studies, most participants indicated that they lacked these opportunities. Other factors in these studies that were found to reduce quality of life were poverty, stigmatization, mental health problems, and negative interactions with members of one’s social network. Overall, the findings of these qualitative studies converge with the previously reviewed quantitative studies in showing the importance of social support, housing, and community integration for people’s well-being.

Goals of the Research The general purpose of this research is to test the ecologicaVempowerment model

of quality of life that has been outlined. More specifically, there are two goals of this research:

1. to examine the relationships between various life conditions (i.e., personal empowerment, social support, housing, and community integration) and satisfaction with different aspects of life, and

2. to explore consumer/survivors’ perceptions of their quality of life through qualitative met hods.

Method

Research Process This research is part of a larger study of the adaptation of psychiatric consumer/

survivors residing in three different types of settings: (a) supportive apartments (SA), (b) group homes (GH), and (c) board-and-care homes (BCH). Members of the research team initially met with housing directors, staff, and mental health workers of these settings to explain the nature of the study. Potential participants were identified by housing staff or mental health workers. Only people who had lived in the GH or SA for a few months were eligible to participate. No other selection criteria were used.

The interviewer then contacted those who indicated an interest in the research either in person or by phone to explain the purpose of the study, what participation would entail, and residents’ rights as participants (i.e., confidentiality, the right to refuse to answer questions, the right to withdraw at any time). Participants were given a letter explaining the study, and they were asked to sign a consent form if they agreed to participate. At the end of the interview, participants were also asked if they would consent to having staff provide information on their level of independent functioning, and all but one of the participants agreed to this. Participants were paid $10 for each of the three interview schedules (Adaptation to Community Living Assessment, Social Net- work Assessment, Housing Environment Assessment) they completed.

More than 90% of the interviews were conducted by two young women, one Black and one White, both with an M.A. in Community Psychology. Interviews were conducted mainly in the housing settings, but on some occasions, they were conducted in nearby coffee shops or mental health offices. The style was informal, with interviewers engaging in small talk, either before or after the interviews (some of the participants

PSYCHIATRIC CONSUMER / SURVIVORS’ QUALITY OF LIFE 22 1

were interested in knowing something about the interviewer after having revealed so much about themselves). The interviewers attempted to make the respondents feel as comfortable as possible, letting them know that they were in control of what they chose to share or not share. A few of the participants talked about the interviews as being tests and hoped they were giving the “right” answers. In those instances, the respondents were assured that the interviewers were interested in the opinions of the participants, and that there were no “right” answers.

In the initial interview, participants completed the Adaptation to Community Liv- ing Assessment and Social Network Assessment; 3 months later, they completed the Housing Environment Assessment. Because many of the participants had just moved into their housing at the time of the first interview, we decided that it would be best to ask them about their housing after they had 3 months to become acclimatized to their residence. Each of the interviews began with open-ended questions and was followed by measurement scales that used fixed-response formats. After each meeting with a participant, the interviewer completed a Contact Sheet to reflect on the interaction. One of the main observations of the interviewers was that people appreciated the opportunity to be interviewed. Many were glad that someone cared enough about their housing situation to want to ask their opinions and hoped that the results could be used to effect change. Once all the interviews were completed, the participants and housing staff were sent a report on the findings.

Sample There were 1 1 1 participants in the study, 61 men and 50 women, all between the

ages of 19 and 78, with a mean age of 36.3 years. Participants resided in SA (n = 32), GH (n = 48). and BCH (n = 31). Half of the participants (n = 55) had completed high school or a higher level of education, and the same number were participating in at least one instrumental role in the community (e.g., student, volunteer, worker) either part-time or full-time. The majority of participants (89%) received social assistance, and the modal income was $500-750 per month. Most (97%) of the participants were single, separated, divorced, or widowed. All but seven (94Vo) of the participants reported taking at least one psychotropic medication for their mental health problems. All of the participants were White.

Measures Information on the scales used in the analyses for this study is presented in Table

1. Three columns are of particular interest in this table, namely the potential and actual range of scores on each scale and Cronbach’s alpha, which measures the internal con- sistency of each scale. First, it should be noted that all variables that we examined, with the possible exception of two, have acceptable reliability. The two anomalies (Mean- ingful Activities [.61] and Basic Needs Satisfaction [.66]) are each measured by scales containing only four items and this fact may have served to constrain their coefficients. In virtually all cases, with the possible exception of Number of Instrumental Roles, which, interestingly, is very low (between 0 and 3) for respondents, the range of scores obtained is spread over almost the entire potential range of scores. Moreover, it is worth noting that the variables measuring Life Satisfaction of the sample tend to have high means relative to their ranges.

Personal empowerment. Pearlin and Schooler’s (1978) Mastery scale was used to assess personal empowerment. Items reflect the extent to which a person perceives that

222 NELSON ET AL.

Table 1 Descriptive Information on Scales

Variables

Potential Obtained Number range of range of Scale Scale Cronbach’s of items scores scores mean SD alpha

Personal empowerment Independent functioning Mastery

Positive emotional support Positive problem-solving

Emotional abuse Avoidance-oriented support

Housing concerns Resident control Democratic management

Social support

support

Housing

style Community integration

Number of instrumental roles Meaningful activity

Relationship satisfaction Housing satisfaction Community integration

Basic needs satisfaction

Total satisfaction

Positive affect Negative affect

Life satisfaction

satisfaction

support

Affect balance

6 7

7

7 7 7

1 1 10

10

10 4

5 7

4

4 20

5 5

6-18 7-28

7-35

7-35 7-35 7-35

0-1 1 10-30

0-10

0-10 4-20

5-35 7-49

4-28

4-28 20- 140

5-25 5-25

8-18 7-28

8-33

7-33 7-35 7-28

0-9 10-27

1-10

0-3 4-20

12-35 22-49

9-28

6-28 58-140

6-25 5-25

14.77 20.00

19.24

15.14 11.46 12.81

2.54 18.20

5.81

.59 11.44

27.22 39.10

19.76

19.50 104.00

15.53 12.80

2.75 4.29

6.73

5.27 4.97 5.52

2.03 4.95

2.40

.67 3.76

4.40 5.77

4.32

4.40 16.41

5.37 5.00

.82

.79

.82

.78

.79

.80

.78

.87

.69

.61

.71

.81

.72

.66

.87

.80

.88

she or he has control over life circumstances and are rated on a 4-point scale from “strongly agree” to “strongly disagree.” The Mastery scale was significantly but weakly correlated (r = .26) with a measure of Independent Functioning.

A six-item Independent Functioning scale developed by Rappaport and his colleagues (1985) was adapted to measure the degree to which a person is able to function in- dependently in areas of daily living such as money management, housekeeping, and meal preparation. Each item is rated on a 3-point scale: others’ responsibility (1 point), shared responsibility (2 points), or own responsibility (3 points). Both residents and housing support staff, with residents’ consent, completed this measure. The staff and resident versions were highly correlated (r = .73). We used the staff version in this study.

Socially supportive and unsupportive actions. There are four subscales in this measure: Positive Emotional Support, Positive Problem-Solving Support, Emotional Abuse, and Avoidance-Oriented Support. The items for the first two subscales were taken from Barrera and Ainlay’s (1983) measure, while we created the items for the latter two subscales. These subscales tap the actual receipt of positive and negative network transactions, not support satisfaction or perceived support. Items are rated as to how


frequently they have occurred in the past month on a 5-point scale from “not at all” to “about every day.” Sample items for each of the subscales are as follows: “told you that s/he feels very close to you” (Positive Emotional Support), “helped you to solve a problem by yourself’ (Positive Problem-Solving Support), “ridiculed or put you down in some way” (Emotional Abuse), and “told you to try to forget about a problem” (Avoidance-Oriented Support).

Housing. Several items were taken from the Rating Scale of Moos and Lemke’s (1 979) Multiphasic Environmental Assessment Procedure (MEAP) to construct a measure of Housing Concerns. These items (e.g., “Does it ever smell bad here?”) are answered on a “yes” or “no” basis and are designed to tap the physical comfort of the residence.

A slightly modified version of the Resident Control scale of the MEAP was used. Residents are asked the extent to which they are involved in decision making (e.g., select- ing new residents) on a 3-point scale: “staff control” (1 point), “shared control” (2 points), or “resident control” (3 points).

A scale to assess Democratic Management Style was adapted from the Tolerance for Deviance scale of the MEAP. Residents are asked which style staff would use to respond to potential problems involving residents (e.g., “verbally threatening another resident”): a democratic style in which staff engages resident@) in problem-solving or an authoritarian or permissive style. One point is awarded for each item rated as in- dicating a democratic style.

Community integration. Residents are asked which of the following instrumental roles they are involved in on a part-time or full-time basis: student, volunteer, sheltered work, job training, and/or competitive work. The total number of instrumental roles is used as an index of community integration.

Maton’s (1990) four-item measure of Meaningful Activity was used. Respondents rate how often they take part in activities that help them meet a job, educational, or career goal, help them achieve a personal goal, use the person’s skills or talents, and contribute to the goals of a group or organization in which they believe. Items are rated on a 5-point scale from “not at all” to “very often.”

Quality of life. Baker and Intagliata’s (1982) measure of Life Satisfaction was used. We added five items dealing with housing, resulting in a 20-item scale. Each item is rated on a 7-point scale from “delighted” to “terrible.” In addition to a total score, we derived four subscales dealing with housing, relationships, community integration, and basic needs. To measure global well-being, we constructed a measure of Affect Balance, similar to that of Bradburn (1968), by subtracting a five-item measure of Negative Affect from a five-item measure of Positive Affect. The items for these scales were taken from Diener and Emmons (1985) and are rated on a 5-point scale of frequency of occurrence over the past week from “not at all” to “every day.”

Qualitative Data

All participants were asked the following open-ended question: “HOW would you describe your quality of life in the community?” Although there were other open-ended questions in the interview schedule, we decided to report only on the responses to this question in this study. The question about quality of life was most germane to the thesis of this study, and to have included responses to the other questions would have gone beyond the scope of this paper. The qualitative data were used to complement and clarify the meaning of the quantitative data.

224 NELSON ET AL.

Data Analysis

For the quantitative data, we computed correlations between the subjective quality of life indicators and various dimensions of personal empowerment, social support, housing, and community integration. Next we computed hierarchical, stepwise multiple regression analyses with the subjective quality of life measures as the dependent variables and personal empowerment, social support, housing, and community integration measures as the independent variables. On the first block, we examined whether demographic variables (age, income, education, and gender), type of housing, and length of residence in the setting would enter the equation at p < .05. None of these variables was significant for any of the six equations. The second step consisted of the two personal empowerment measures, while the third step sought to determine if any of the social resources (social support, housing, and community integration) could add significantly to the prediction of quality of life. The method of pairwise deletion of missing data was used. Except for the housing measures, there were very few cases of missing data. For the housing measures, the smallest number of cases for which there were no missing data was 70. Therefore, the degrees of freedom for the regression analyses were reduced because of these missing data.

We followed the guidelines of Miles and Huberman (1984) for qualitative data analysis. First, responses to the open-ended question were transcribed and the process of coding was used to attach key words or phrases to the data. With two people coding the data, the codes were changed and refined as the data analysis proceeded until a final set of codes was arrived at. Quotes that illustrate each code were highlighted.

Although qualitative researchers do not typically examine the reliability and validity of their data in the same way that quantitative researchers do (i.e., obtaining statistical estimates), they are concerned with establishing the trustworthiness of their data. Trustworthiness refers to the degree to which the data are credible (accurately represen- tative of participants’ views), dependable (consistent or replicable), and confirmable (free from the preconceptions of the researcher) (Lincoln & Guba, 1985). We used several methods to establish the trustworthiness of the data. First, we held feedback meetings with residents and staff, and they confirmed that the data reflected their viewpoints. Second, two of the authors coded the data and arrived at a very similar set of codes. Finally, we compared the qualitative findings with the quantitative findings to examine the convergence or divergence of these two types of data, and we compared the qualitative findings with those of other studies.

Results

Quantitative Results

Correlation and regression analyses were performed on the data in relation to the first goal of the study and the conceptual model outlined in Figure I . Correlations were computed between the indicators of personal empowerment, social support, housing, and community integration, on the one hand, and the Life Satisfaction subscales, total score, and the Affect Balance measure. (See Table 2.) In terms of personal empowerment, the measure of Mastery (perceived control) was significantly correlated with satisfaction with community integration (r = .26, p < .01) and basic needs (r = .29, p < .Ol), Total Satisfaction (r = .28, p < .Ol), and Affect Balance (r = .40, p < . 01).

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All

Var

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~

1 2

3 4

5 6

7 8

9 10

11

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1.

2.

3.

4.

5.

6.

7.

8.

9.

LO.

11.

12.

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17.

Inde

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ent

func

tioni

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Mas

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.2

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sitiv

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nal

supp

ort

.oo

.21

Posi

tive

prob

lem

-sol

ving

sup

port

- .I

I .0

2 Em

otio

nal

abus

e .I

5 -.

06

Avo

idan

ce-o

rient

ed s

uppo

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-.I3

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sing

con

cern

s -.

08

.02

Res

iden

t con

trol

-.

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.I4

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ocra

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man

agem

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styl

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5 .4

0

Inst

rum

enta

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Mea

ning

ful

activ

ity

-.03

.2

7 R

elat

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satis

fact

ion

-.12

.0

9

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sing

sat

isfa

ctio

n .oo

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3

Com

mun

ity i

nteg

ratio

n sa

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sat

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tisfa

ctio

n -.I5

.28

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alan

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-.I4

.40

.67

.08

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.65

.39

- .0

3 .I

1 .2

2 .2

6 .I

6 .2

2 .O

O .I

9 .I

3 .0

2 .0

6 .0

8 -

.05

-.23

.2

5 .04

.09

.oO

.08

-.05

-

.I9

.39

.33

.MI

.12

-.05

-.0

2 .2

2 .I

3 -.2

6 -.

08

-.20

-.

07

.16

.12

-.16

-.0

6 -.

28

.05

.I4

.05

- .2

6 -

.08

-.I4

- .

04

.10

.09

-.11

-.05

-.

30

.08

.23

.I5

-24

-.05

-.

30

.I6

.14

.06

-.21

-.

09

-.03

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5

.I1

.07

.27

.09

.06

.21

.27

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.28

.55

10

C

$- E: 4

.Ol

.12

.38

.65

.57

4

.27

.06

.22

.48

.38

.60

8 .2

3 .0

7 .3

5 .8

2 .8

I .8

5 .7

6 .1

3 -.04

.32

.48

.41

.69

.64

.68

226 NELSON ET AL.

However, the measure of Independent Functioning was not significantly correlated with any of the satisfaction measures.

Turning to the social support measures, we found Positive Emotional Support to be directly related to satisfaction with relationships (r = -22, p < .05) and with Total Satisfaction (r = .23, p < -05). Emotional Abuse was inversely related to satisfaction with relationships ( r = - .26, p < .Ol ) , community integration ( r = - .26, p < .Ol), Total Satisfaction (r = - .24, p < .05), and Affect Balance (r = - .21, p < .05). On the other hand, neither Positive Problem-Solving Support nor Avoidance-Oriented Sup- port was related to any of the dimensions of satisfaction.

With respect to the dimensions of housing, we found that Housing Concerns was inversely related to satisfaction with housing (r = -.28, p < .05) and basic needs ( r = - .30, p < .01) and Total Satisfaction (r = - .30, p < .01). Resident Control was not related to any of the satisfaction measures. On the other hand, we found that a Democratic Management Style was positively correlated with satisfaction with housing (t = .27, p < .05) and basic needs (r = .27, p < .05) and Total Satisfaction (r = .23, p < .05), as we expected.

Finally, the two indices of community integration related quite differently to the satisfaction measures. The number of instrumental roles was not correlated with any of the satisfaction measures, whereas Meaningful Activity was positively correlated with satisfaction with relationships ( r = .21, p < .05), housing (r = .28, p < .Ol), community integration (r = .38, p < .Ol), and basic needs (r = .22, p < .05), Total Satisfac- tion (t = .35, p < .O l ) , and Affect Balance (r = .32, p < .01).

The results of the multiple regression analyses presented in Table 3 include the multiple R and R2 values for each step and the betas and F values for the final equations. The level of dependent variable explanation attained in each case was low (form R2 = .07 for Relationship Satisfaction to R2 = .25 for Total Satisfaction). However, each equation was statistically significant at or beyond the 99% confidence level.

For independent variables loaded on at least three equations. Meaningful Activity loaded at p < .05 on three equations, namely, Housing Satisfaction, Community In- tegration Satisfaction, and Total Satisfaction. The signs of the respective beta coefficients indicate that the more meaningful activities consumer/survivors are involved in, the higher their level of satisfaction.

Mastery loaded positively at p < .01 on Basic Needs Satisfaction and Affect Balance and at p < -10 on Community Integration Satisfaction and Total Satisfaction. Not surprisingly, Housing Concerns loaded negatively on Housing Satisfaction (p < .05), Basic Needs Satisfaction (p < .Ol) , and Total Satisfaction (p < .05). The sign of the coefficients suggests that as housing concerns increase, satisfaction with the dependent variables decreases. Especially important here is the result with respect to Basic Needs Satisfaction, as this finding confirms the view that adequate and appropriate housing is one of the most important components of the basic needs of consumer/ survivors.

The final variable that loaded on three variables (community Integration Satisfac- tion, Basic Needs Satisfaction, and Affect Balance) is level of Independent Function- ing. In each case, the sign of the beta coefficient is negative, suggesting that as Indepen- dent Functioning increases, satisfaction decreases. However, as was noted earlier, none of the simple correlations between Independent Functioning and the satisfaction measures is statistically significant. These findings suggest that Independent Functioning entered the regression equations because of a suppressor effect, not because it is related to the


Table 3 Multiple Regression Analyses with Personal Empo werment, Social Support, Housing, and Com- munity Integration Measures as Independent Variables and Subjective Quality of Life Measures as Dependent Variables

Dependent variables Independent variables Multple R R* Beta

Relationship satisfaction Emotional abuse

Housing satisfaction Meaningful activity All variables

Housing concerns All variables

Community integration satisfaction Mastery

Independent

Meaningful activity All variables

Independent

Housing concerns All variables

Housing concerns Meaningful activity All variables

Independent

All variables

functioning

Basic needs satisfaction Mastery

functioning

Total satisfaction Mastery

Affect balance Mastery

functioning

.26 F(1,60) = 4.32**

.28

.39 F(2,59) = 5.28**

.26

.36

.46 F(3,58) = 5.31**

.29

.38

.50 0 3 3 8 ) = 6.55’.

.28

.42 S O

F(3,58) = 6.28** .40

.48 F(2,59) = 8.59**

.07

.08

.I5

.07

.13

.22

.08

.I5

.25

.08

.I7

.25

.16

.23

- .26*

.27* - .27*

.24

- .23 .31*

.37**

- .29* - .33**

.21 - .29*

.28*

.47**

- .26*

satisfaction measures. The only other variable to enter an equation was Emotional Abuse, which loaded negatively on Relationship Satisfaction (p < .05).

Qualitative Results The open-ended question about quality of life was coded, and eight distinct codes

were identified: (a) increased understanding of oneself; (b) the importance of positive relationships; (c) the effects of negative relationships; (d) positive feelings about their housing situation; (e) the desire for more privacy; (f) the need for active participation in the community; (g) the effects of poverty; and (h) poor mental health.

Increased understanding of seu. Some participants talked about how coming to a better understanding of their illness and their situation enabled them to enjoy a better quality of life:

. . . In my daily life I feel safer within myself and I have a very self-confident, friendly personality. . . . (SA participant). . . . I don’t have a lot of anxiety about where I am today, and I’m not upset because I’m not working. The most important thing is that I’m getting my life back in order and I work on that on a daily basis. (SA participant) . . . I’m happier now than I was last year. I’m coming to grips with some of my old memories, things I didn’t understand before. (GH participant)

228 NELSON ET AL.

. . . My personality towards myself and others is good since I’m not drinking. There’s more to look forward to, to plan for. I have a future. (GH participant)

The importance of positive relationships. Participants talked about the significance of having supportive relationships that could contribute to one’s quality of life. It is within supportive relationships that one can share common interests and find stimuli for intrapersonal growth:

I was really frightened coming here, but they’re all kind and good. I join in as much as possible . . . I feel good about my relationships. (GH participant) . . . (My) relationships are pretty good. The place is excellent for re-entry housing. It’s a good place to start-low rent, good relationships with the community and people I’m living with. (SA participant) . . , There’s always someone around if you need help. I enjoy being around the people who live here. (BCH participant)

Negative relationships. Some participants talked about the ways in which stress caused by negative relationships affected their overall quality of life. Some also talked about how the lack of intimate relationships with the opposite sex made them feel bored or left out. Others worried about the welfare of close family members.

. . . (My quality of life) is very poor at the moment . . . lots of distance, alienation among friends. . , . I don’t seek out other friends. (GH participant) . . .We didn’t have a good combination of people living here . . . the tension was high . . . anger and hostility. We had two or three meetings a week with staff and residents re: verbal and sometimes physical abuse. The situation was so bad that I was seriously considering re-admission in January. (GH participant)

Positive feelings about one’s housing situation. Participants in all three housing settings expressed satisfaction and appreciation for the positive quality of life afforded by their housing. They appreciated the fact that the housing was affordable. For the most part the housing was located near needed services and facilities. Participants found that the housing programs provided safe learning environments within which basic life skills could be acquired. The housing in general offered a good transition between the hospital and being on one’s own in the community:

Nice living here. The government should have more subsidized housing like this. Nice location, people who can share love and understanding. (SA participant) . . . I’m happy here . . . the food is fantastic. The people are cooperative (both) residents and staff. This is the best place I’ve been since I’ve been out of the hospital. (GH participant)

Need for moreprivacy. Some residents from all the settings talked about the need for more privacy and the desire to live alone.

I’d like to have my own room. A shared room is “the pits.” Some people need privacy. I need privacy. (GH participant) I’m more of a loner. Living here has been an adjustment because I’ve never really had roommates. I want to get a place of my own. . . . (SA participant) . . . The living-room is overcrowded. Everybody here should have their own rooms. Right now there’s three in one room. . . . (BCH participant)

Need for active participation in the community. Many of the participants stated that it was extremely important for them to be involved in various capacities in the wider


community. Such involvement allows them to become more confident about their own abilities and helps them to avoid being stigmatized, as would be the case if they socialized only with psychiatric consumer/survivors:

I’m still not happy. I have limited social contact with people outside of the system. (SA participant) Being part of the neighborhood, using community facilities (library, pool), being a regular neighbor, (receiving) positive responses from people in general. . . . I feel myself like a normal person, not an outcast or a misfit. (SA participant) I was looking at going to school but it didn’t work out. Since then I’ve been involved with different non-profit organizations. I’m on the board of directors for (a self- help organization). I edit a newsletter for the residents’ council. I’m a facilitator for a group on depression for the (self-help organization). I’m on the planning com- mittee for (a mental health housing agency). Also, (a community mental health agency) has had some meetings looking at its direction and I’m attending those. I’m planning on going back to school in the fall. . . . (SA participant)

Poverty. One of the issues that participants touched on was poverty, that is, never having as much money as they needed to have a decent standard of living. Some BCH participants reported having only about $100 per month after room and board costs were covered, which never seemed to be adequate, especially if the person smoked. Not having enough money greatly reduced the participants’ sense of autonomy and self- confidence. Lack of money also increased the need to be dependent on others. Some participants talked about the desire to find challenging work that would lead to increased finances and better self-esteem:

(My quality of life) sucks! (It’s) not good at all! Having a job would improve my self-image. If it was better, my quality of life would improve. (SA participant) Terribly boring. I feel left out. I can work at my quality of life but I can’t participate in some things like going to a bar with my friends because I don’t have the money, can’t drink. The money situation is limiting. (GH participant) Since being here . . , my cheque was . . . lowered. We all contribute in many ways and should be treated as equal. We should be getting more than the poverty line. . . . (GH participant) As a disabled woman, I cannot marry a working class or professional man. The government would terminate my pension. I can only marry another disabled man. (BCH participant)

Poor mental health. Some participants talked about the ways in which poor mental health affected the chances of their enjoying a high quality of life:

. . . I don’t know about the possibility of a recurrence of my illness and I feel at the mercy of my illness. I’m reluctant to make any long-range plans or commitments. (GH participant) (My quality of life) wavers from very good to bad depending on my mental illness at the time. . . . (GH participant) . . . I want to get out and work and can’t because of my health. (GH participant) . . . because my health has been poor, my quality of life has been poor. It’s gone downhill. (SA participant) . . . I have a little bit of trouble with people because of how the illness has changed me. I have . . . some friends that I’ve scared off. . . . (SA participant)

230 NELSON ET AL.

Discussion The intention of this study was to assess the relationships between objective and

subjective indicators of psychiatric consumer/survivors’ quality of life using quantitative methods and to provide more depth of understanding of consumer/survivors’ quality of life using qualitative methods. Accordingly, in attempting to understand community adaptation as experienced by psychiatric consumer/survivors, we developed, a priori, an ecological/empowerment model (Figure 1). We reasoned that the objective life conditions of personal empowerment, social support, housing, and community integration would be related to subjective quality of life. In fact, as noted earlier, various studies in recent years have shown relationships between some of these dimensions and consumer/survivors’ life satisfaction. But the findings we obtained did not conform precisely to the model nor to the previous literature. One noteworthy limitation of the model is the fact that both the correlational and regression analyses revealed that the objective indicators of consumer/survivors’ life conditions accounted for a small percentage of the variance of their subjective quality of life. Previous research by Lehman (1988) and Rosenfield (1992) has also found that factors in their models of quality of life leave most of the variance in life satisfaction unexplained. In the following discussion, we present a revised model of quality of life in terms of both our quantitative and qualitative findings.

One component of personal empowerment, perceived control, was positively related to quality of life. This finding is consistent with that of Rosenfield (1992). Moreover, we found that qualitative data shed important light on the construct of personal empowerment. The participants’ comments indicate that their sense of personal competency and life satisfaction are positively affected by increased self-understanding, which seems to have a bearing on enhanced feelings of self-efficacy. The second personal empowerment component in our original model, independent functioning, was not related to quality of life, contrary to our expectation; originally we had thought that perceived adequacy in those instrumental skills needed to manage the tasks of daily living would be related to personal control and life satisfaction. It is possible that the participants in this study regarded other issues, like self-understanding, as more relevant to their well-being,

One relevant component of personal empowerment could be actual as opposed to perceived power. Rosenfield (1992), for example, has found that consumer/survivors’ actual power, as measured by an index of shared responsibility in managing a community support program, was related to their life satisfaction. Future research should incorporate such measures, as the concept of empowerment needs to be grounded in actual control, as well as perceived control (Riger, 1993; Wallerstein, 1992).

Two aspects of social support, positive emotional support and emotional abuse, were related to quality of life. The qualitative data confirmed these findings in that the participants testified to the important effect of both positive and negative relationships in their lives. These themes and the quantitative results are consistent with previous studies of social support and quality of life with psychiatric consumer/survivors (Baker et al., 1992; Lehman, 1988; Lord et al., 1987; McCarthy & Nelson, 1993; Nelson et al., 1992; Sullivan et al., 1992). Our findings also reflect the centrality of relationships in human development; that is, growth through connectedness with others, as expressed, for instance, in Riger’s (1993) revision of the empowerment concept. The exploratory hypothesis of a relationship between positive problem-solving support and avoidance- oriented support, on the one hand, and well-being proved fruitless, pointing to the need

PSYCHIATRIC CONSUMER / SURVIVORS’ QUALITY OF LIFE 23 1

for re-thinking this aspect of support. Curiously, comparable research has shown a positive relationship between well-being and positive problem-solving support (e.g., Nelson et al., 1992); it is unclear why we did not derive a similar result. Perhaps problem- solving support, whether positive or avoidance-oriented, is important for facets of community adaptation (e.g., personal growth and skill development) other than well-being.

Two of the three housing dimensions, housing concerns and democratic management style, were related to several of the measures of subjective quality of life, com- plemented by two themes from the participants’ comments, namely, positive feelings about one’s housing situation and the need for more privacy. These results dovetail with closely related studies by Baker and Douglas (1990), Champney and Dzurec (1992), Lehman et al. (1982), and Lehman (1988), and they support an emerging consensus on the value of quality housing for consumer/survivors’ well-being (Carling, 1995). Although previous research has shown consumer/survivors’ perceptions of control over day-today decision making in their residences to be positively associated with their life satisfaction (McCarthy & Nelson, 1991), we found that resident control was not related to any of the measures of life satisfaction. Because most of the people in the sample had only recently moved into supportive housing, they may have been in the early stages of recovery and required more support than control. Clearly, this issue demands further exploration.

With regard to community integration, residents’ perception of their involvement in meaningful activity was directly related to all measures of life satisfaction, a finding that replicates Champney and Dzurec’s (1 992) similar study of supportive housing residents. The key distinction to be made here is between “meaningful” activity as defined by residents and by service providers. A major qualitative theme, the need for active participation in the community, echoes the participants’ desire for meaningful involvement in the wider community to attain a sense of normalization. As Carling (1990, 1995) has argued, self-determination of community-based activities fosters quality of life. However, the simple index of number of instrumental roles showed no relationship to well-being. Thus, our findings suggest that the quality of community integration is more important in residents’ eyes than the quantity of roles performed.

Two additional themes from the qualitative findings merit attention, the effects of poverty and of poor health, including mental health. Our original ecological/empowerment model did not account for these issues that have surfaced in related research by Lehman (1988). Conceptually, the domains of financial and health status pertain to the concrete realities of everyday life in the community; if a person is generally poor and feeling unhealthy, her or his quality of life is diminished. Future theory and research should include these dimensions. For example, measures of perceived mental health and health, such as those developed by Lehman (1988), could be used. With regard to financial status, measures of economic stress are probably more useful as research instruments than income, because there is a very narrow range of income for most consumer/survivors. Hence, it is unlikely that any relationships with other measures will appear, if income alone is used.

It is interesting to note that Rosenfield’s (1992) model of empowerment, which is somewhat narrower in focus than ours, specified the impact of actual power in the form of adequate, personal economic resources, as well as the influence of perceived control (mastery) on well-being. Furthermore, Rosenfield found that consumer/survivors have a need for structure in their daily lives that appears to be independent of the need for mastery. Taken together, the present findings, in concert with those in the literature on

232 NELSON ET AL.

quality of life, require integration into a revised, comprehensive, and empirically based conceptual framework to guide future investigators and to inform policy and practice. Currently, a small but growing literature suggests that personal factors, such as feelings of control, self-understanding, and mental health, and social-environmental factors, including social support, housing, financial resources, and meaningful community integration, are important for consumer/survivors’ subjective quality of life. These dimensions should be explored in further investigations of a revised ecological/empowerment model of quality of life.

References

Andrews, F. M., & Withey, S. B. (1976). Social indicators of well-being. New York: Plenum Press. Baker, F., & Douglas, C. (1990). Housing environments and community adjustment of severely mentally

ill persons. Community Mental Health Journal. 26, 497-505. Baker, F., & Intagliata, J. (1982). Quality of life in the evaluation of community support systems. Evalua-

tion and Program Planning, 5 , 69-79. Baker, F., Jodrey, D., & Intagliata, J. (1992). Social support and quality of life of community support

clients. Community Mental Health Journal, 28, 397-41 1. Barrera, M., & Ainlay, S. L. (1983). The structure of social support: A conceptual and empirical analysis.

Journal of Community Psychology, 11, 133-143. Billings, A. G., & Moos, R. H. (1981). The role of coping responses and social resources in attenuating

the stress of life events. Journal of Behavioral Medicine, 4. 139-157. Bradburn, N. M. (1968). Capponi, P . (1992). Upstairs in the crazy house: The life of a psychiatric survivor. Toronto: Viking. Carling, P. J. (1990). Major mental illness, housing, and supports: The promise of community integration.

American Psychologist. 45, 969-975. Carling, P. J. (1995). Return to community: Building support systems forpeople with psychiatric disabilities.

New York: Guilford Press. Chamberlin, J., & Rogers, J. A. (1990). Planning a community-based mental health system: Perspective

of service recipients. American Psychologist, 45, 1241 -1244. Champney, T. Z., & Dzurec, L. C. (1992). Involvement in productive activities and satisfaction with living

situation among severely mentally disabled adults. Hospital and Community Psychiatry, 43, 899-903. Diener, E., & Emmons, R. A. (1985). The independence of positive and negative affect. Journal of Per-

sonality and Social Psychology, 47, 1105-1 117.

The structure of psychological well-being. Chicago: Aldine.

Earls, M., & Nelson, G. (1988). The relationship between long-term psychiatric clients’ psychological well- being and their perceptions of housing and social support. American Journal of Community Psychology,

Flanagan, J. C. (1978). A research approach to improving our quality of life. American Psychologist, 33, 16, 279-293,

138-147. Hall, G. B., Nelson, G., & Smith Fowler, H. (1987). Housing for the chronically mentally disabled: Part

1 - Conceptual framework and social context. Canadian Journal of Community Mental Health, 6(2), 65-78. Holahan, C. J., & Moos, R. H. (1985). Life stress and health: Personality, coping, and family support in

stress resistance. Journal of Personality and Social Psychology, 47, 739-747. Kennedy, C. (1989). Community integration and well-being: Toward the goal of community care. Journal

of Social Issues, 45, 65-71. Lehman, A. F. (1988). A quality of life interview for the chronically mentally ill. Evaluation and Program

Planning, I I , 5 1-62. Lehman, A. F., Reed S. K., & Possidente, S. M. (1982). Priorities for long-term care: Comments from

board-and-care residents. Psychiatric Quarterly, 54, 181 -189. Lincoln, Y. S., & Guba, E. G. (1985). Lord, J., & Hutchison, P. (1993). The process of empowerment: Implications for theory and practice.

Lord, J., Schnarr, A., & Hutchison, P. (1987). The voice of the people: Qualitative research and the needs

Naturalistic inquiry. Beverly Hills: Sage.

Canadian Journal of Community Mental Health, 12(1), 5-22.

of consumers. Canadian Journal of Community Mental Health, 6(2), 25-36.


Maton, K. I. (1990). Meaningful involvement in instrumental activity and well-being: Studies of older

McCarthy, J., & Nelson, G. (1991). An evaluation of supportive housing for current and former psychiatric

McCarthy, J., & Nelson, G. (1993). An evaluation of supportive housing: Qualitative and quantitative perspec-

McKnight, J. (1989). Do no harm: Policy options that meet human needs. Social Policy, 19, 5-15. Mercier, C., RCnaud, C., Desbiens, F., & Gervais, S. (1990).

adolescents and at-risk urban teenagers. American Journal of Community Psychology, 18, 297-320.

patients. Hospital and Community Psychiatry, 42, 1254-1256.

tives. Canadian Journal of Community Mental Health. 12(1), 157-175.

The contribution of services to the quality of life of psychiatric patients in the community. Report presented to the Social Welfare Grants Pro- gram, Health and Welfare Canada.

Miles, M. B., & Huberman, A. M. (1984). Qualitative data analysis: A sourcebook of new methods. Beverly Hills: Sage.

Moos, R. H., & Lemke, S. (1979). Multiphasic environmental assessment procedure (MEAP): Preliminary manual. Palo Alto, CA: Stanford University and V.A. Medical Center, Social Ecology Laboratory.

Murrell, S. A., & Norris, F. H. (1983). Quality of life as the criterion for need assessment and community psychology. Journal of Community Psychology, 11, 88-97.

Nelson, G., Hall, G. B., Squire, D., & Walsh-Bowers, R. T. (1992). Social network transactions of psychiatric patients. Social Science and Medicine, 34, 433-445.

Nelson, G., & Smith Fowler, H. (1987). Housing for the chronically mentally disabled: Part I1 - Process and outcome. Canadian Journal of Community Mental Health, 6(2), 79-91.

Nelson, G., & Walsh-Bowers, R. (1994). Psychology and psychiatric survivors. American Psychologist, 49,

Patton, M. Q. (1990). Qualitative evaluation and research methods (2nd ed.). Newbury Park, CA: Sage. Pearlin, L. I., & Schooler, C. (1978). The structure of coping. Journalof Health andSocial Behavior, 9.2-21. Rappaport, J. (1987). Terms of empowerment/exemplars of prevention: Toward a theory for community

psychology. American Journal of Community Psychology, 15, 121-144. Rappaport, J., Seidman, E., Toro, P. A., McFadden, L. S., Reischl, T. M., Roberts, L. J., Salem, D. A..

Stein, C. H., & Zimmerman, M. A. (1985). Finishing the unfinished business: Collaborative research with a mutual help organization. Social Policy, 16, 12-24.

Riger, S. (1993). What’s wrong with empowerment. American Journalof Community Psychology, 21,279-292. Rook, K. S. (1984). The negative side of social interaction: Impact on psychological well-being. Journal

Rosenfield, S . (1992). Factors contributing to the subjective quality of life of the chronic mentally ill. Jour-

Sullivan, G., Wells, K. B., & Lake , B. (1992). Clinical factors associated with better quality of life in a

Wallerstein, N. (1992). Powerlessness, empowerment, and health: Implications for health promotion pro-

895-896.

of Personality and Social Psychology, 46, 1097-1 108.

nal of Health and Social Behavior, 33, 299-315.

serious mentally ill population. Hospital and Community Psychiatry, 43, 794-798.

grams. American Journal of Health Promotion, 6, 197-205. Zautra, A. J. (1983). Social resources and the quality of life. American Journalof Community Psychology,

If, 175-190. Zimmerman, M. A., & Rappaport, J. (1988). Citizen participation, perceived control, and psychological

empowerment. American Journal of Community Psychology, 6, 725-750.

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Psychiatric consumer/survivors' quality of life: Quantitative and qualitative perspectives